So happy to have diagnosis after 25 years of pain

Hi! I'm new here and was looking for information on endo and associated cysts.

Since I was 18 years old I have been having admissions to hospital for 'non specific pelvic pain'. At 19 I had my first lap and was told I had endo and I may never have children because of it. Then I was discharged with no follow up.

Over the years I have had many admissions which usually resulted in ultrasound scan with consultant then telling me I was constipated and discharging me with laxatives. For a long time I was thinking that I was just some sort of wimp or hypochondriac because usually after the pain, I would start a period.

I went on to have two children with very complicated pregnancies.

Around 4 years ago I had my womb removed as hysterectomy because I was only getting 3-4 days between periods. And I have always suffered terribly with painful periods and migraine before and after. This meant if I wasn't having a migraine, I was bleeding.

On Monday evening of this week I had sudden onset of pain. By Tuesday afternoon, I couldn't stand up and called the GP, who came to my house. On examination she was concerned it may be my appendix (how many times have I heard that?!) and admitted me to the acute surgical unit.

Thankfully I had a wonderful consultant pop in who decided that I should be taken to theatre for investigative lap. Consent included possible removal of appendix or ovarian cyst (if either were the cause).

I woke up with a serious amount of pain, more than before, to be told my appendix was fine but I would be getting sent to the gynae ward. The gynae consultant had some lovely colour photos from my lap which shows my bladder, ovaries, omentum, and pelvic wall all covered with chocolate cysts. There is one large one which has adhered to the pouch of Douglas and part of my rectum. All this has been caused by endo. I have had a look online to see how common this is and I can't seem to find any images which show as many cysts as mine seem to.

I've been given an implant to kick start the menopause (a family record at 43!) by 'turning off' my ovaries. I've been told I will see my new endo consultant in around 4 weeks to discuss having ooferectomy (not sure if that's how to spell it), cervix and cysts removed. He will also give me biopsy results. I am a bit worried about this.

I may be being paranoid but I have good reason. My friend is currently in the final stages of ovarian cancer with only weeks to live. So please excuse me for being over anxious.

Have any of you had similar experiences? Or have you had this surgery? I'm still in a hell of a lot of pain, and SO tired and my op was now 4 days ago. How much worse and longer is it going to take? And what about the bigger op? Will I be ill for a long time?

Any advice or anyone going through the same please get in touch?

Many thanks and gentle hugs

Gweeda x

8 Replies

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  • Hi Gweeda

    The sad thing is that you actually had your diagnosis at age 19 but no one has taken notice since. This is ovarian endometriosis and is common but you clearly have an extreme case. What is puzzling is that if this was present 4 years ago it should have been evident at the time of the hysterectomy and must have developed during that time. I assume you haven't had hrt with the ovaries being retained. When advanced endometriomas are present there will usually be deep endo elsewhere, usually deep beneath the pouch of Douglas. You need treatment by very skilled endo surgeons. Are you in the uk?

  • Hi Lindle,

    Thanks for your reply. Yes I am in the uk and have been assured that the consultant I am being referred to specialises in endo treatment and care. But he was the surgeon who did my hysterectomy so I'd have thought he would have noticed my endo?

    I have the largest of my cysts and adhesions on pouch of Douglas. Basically everything else in the pelvic cavity is absolutely covered with small endo cysts. Including one which is a bit larger than the small ones on my ovary. I would share the photos but not sure that everyone would care to look at my rectum from the inside 😂. No HRT so far but have had an injection to turn the ovaries off. Hoping to be able to avoid HRT if possible? Don't know if this is an option?

    As I said before, any advice or people going through similar, please get in touch. If nothing else we can go through it together. ❤️ Thanks again Lindle

    Gwen

  • Hi Gwen

    I'm so sorry that you're like the rest of us with such rubbish treatment & feelings of being a hypochondriac! I can't help really but on Facebook there's a site called Endometropolis, some fantastic Drs many be able to look at your photos and give some advice or at least put your mind at rest. I'd also check that like Lindle said, that your surgeon is a specialist in the endo field. Good luck lovely Kelly

  • Hi Simo7,

    Thanks for your kind words and helpful advice. I will certainly look up that group on Facebook.

    Going to try and see what information I can find on my consultant today too.

    Still really struggling with pain and it's now my 5th day post op. Also (sorry if this is tmi but I am quite worried about it) any BM or peeing is hurting like hell. Today I have pain all down my left buttock and inner thigh too.

    Is it always this miserable?!

  • Hi. I suffer with the rectal pain...all I can say is that it is like someone pushing a carving knife deep into your bottom. My friend at work laughs as I have to leap up out of my seat - she said it looks like I have sat on an electrical current. My endo is pretty bad around the bowel. I am going in for a subtotal hysterectomy next week but will be left needing a lifelong colostomy bag for the years of undiagnosed damage it has caused. However I will gladly take this option than be left with the agonising bum pain. My husband cheekily slapped my bum the other night I nearly murdered him there and then !!

    Pain relief , nothing really touches it. sitting down, standing up makes no difference, ask about them removing the damaged part of the bowel but like myself be prepared for colostomy.

    I am happily embracing my hysterectomy next week after 20 years of pain, I have had some custom made colostomy bags made that say...'does my bum look big in this'

    I am 41 in a happy marriage with a wonderful hubby who understands - this really has helped me through a lot.

    I hope you have a good support network and good luck x

  • Hi Helen,

    Wow it's actually really reassuring that someone else has the same pain as me! Mine is because I have (what they have called) a 'mass' tucked between the rectum and pounce of Douglas. Tbh I hadn't even considered that I may need a colostomy. Currently my best friend is in the final stages of ovarian cancer (weeks not months left) and I can remember trying to play down how bad a colostomy is when she had to have one, never for a minute thinking it might be me one day!

    Also, funnily enough, my little girl often gives my butt a wee slap and I try to grin and bear it. Her dad has tried telling her that she mustn't do that to mummy because it hurts but I don't want her thinking I am made of glass or worrying about my health so I just try to grin (through gritted teeth) lol.

    I had a subtotal hysterectomy around 3-4 years ago. Now I have to go get the rest removed as they've said that as long as my ovaries remain (they also have chocolate cysts) and my cervix, that I will continue to have endo. A doctor came to discuss this with me. He sat down and asked how I was feeling about losing my ovaries etc. I was very puzzled by this as he was talking like they were taking away who I am! I told him that I am quite matter of fact about it. 1. I don't need them. 2. I won't be having any more children. 3. They are causing endless pain. 4. IMO get rid! He seemed amazed that I was so matter of fact about it and said that some women feel that they are losing their 'womanhood'. REALLY?? It won't change who I am as a person except I (hopefully) won't have half my life in bed exhausted or in pain?

    My OH is amazing too. We have been together 11 years now and he is just the best man I have ever met.

    Loving the custom bags! Think mine would say 'This is NOT a recycled bag!' 😜

    Thanks for your reply, it's so good to know I am not alone. I really hope everything goes smoothly with your op. Please keep in touch and let me know how you get on, when you're feeling up to it.

    Good luck and best wishes xx

  • Tell your consultant that you're hurting, it may be pain from op (what did they do?) or you may have an infection. Good luck eighths consultation, will you your biopsy results today?

  • Hi Kelly,

    The ward had said that if I had any problems to contact my GP. Did this yesterday and she just said it will take a few weeks to settle down. It was only a diagnostic laparoscopy that was done. But I did get some wonderful colour pics of my insides! Think I might add them to the holiday snaps, just for fun. During the op they straightened out the rectum so they could get a proper look at 'the mass' and take biopsies. So maybe it's just swelling and bruising on the inside causing the pain?

    I was told it will be around 4 weeks (3 now) until I see my consultant and will get my biopsy results then. Feels like forever to wait but apparently I have to heal from this op before they can do the other op. I reckon that means in 4 weeks I will get another injection of zoladex to give them at least another 4 weeks to find a space on a list for me.

    Guess I'm just a very impatient patient! With my friend being so desperately ill and in the next city I want to be back on my feet so I can drive through to see her before anything happens. We've been friends since we were 11 (32 years!) and the thought of never seeing her again is totally unbearable. With previous laps I have been pretty much back on my feet by now so feeling really frustrated that I'm not this time - when it really matters!

    Thanks again for the info, I requested to join the fb group yesterday so hoping I'll have been approved by today. xx

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